Sunday, 25 May 2014

Over Thinking

The weather has improved today but unfortunately my mood hasn't. I feel inexplicably sad today. Almost as though I am mourning. It is very hard to put my finger on anything in particular that is making me feel this way but I just do.

I slept really well last night, mostly from exhaustion at my early start than anything else. I'd spent Saturday relaxing in front of the TV or baking in the kitchen but my concentration was poor and I really wasn't in the mood for anything. I enjoyed the Grand Prix qualifying at Monaco and will no doubt be equally enthralled with the race later today. I love the Monaco GP and that is one of the things on my bucket list to do post transplant. I want to see the Grand Prix in two places. Silverstone, the easier of the two to accomplish, it being in the UK and not far from where I live, and Monaco. Unfortunately I'm not allowed out of the country at the moment so that is one that is going to have to wait.

I know it sounds stupid but I really wish I hadn't had that false alarm now. I'm back to jumping at every phone call and I'm worried that next time I'll be really scared and not as calm as I was on this occasion. I also worry that that might have been my one and only chance and that I'll never get another call. If I do, well I imagine I'm in for another long wait. It took seventeen months for the first call and I'm gearing myself for a similar wait before the next one.

On top of all that the confidence I had in my pump and line has gone completely and I find myself constantly checking the pump and connectors. I know I've been lucky in that in the three years I've have the line and pump I've only had two major scares with it. One a couple of years ago when I split the line and of course last week's mishap with the faulty connector and blood clot. However at the moment I have severe OCD about it and can't relax. I've even taken to taping the line to me at night so it cannot get kinked or twisted when I sleep, as a result I go to bed bristling with tape. I know it is ridiculous and unhealthy but I can't help myself. Logically I know that to get faulty connectors or lines is extremely rare so to get a similar failure is very unlikely. I also know that once the clot had cleared the line there is very little chance of getting another one, especially as the pressure of the drug is keeping blood out of the line again, and I'm on a higher dose of Warfarin but I'm terrified of it happening again. Maybe I would have dealt with this event better if it hadn't come so close to the false alarm. Who knows? All I do know is that I'm dealing with it very badly indeed at the moment.

For lunch I made a chicken curry from scratch, again another distraction technique, and couldn't eat it. Not because it was bad, both Peter and Andrew declared it delicious and had seconds, but because I just didn't feel like eating. I feel as though I'm in some sort of holding pattern and can't get back into my normal routine. Maybe when I return to work on Tuesday (I'd booked Monday off ages ago) things will start to slot back into place and I will begin to relax a little.

Tomorrow, if the weather continues to improve I plan to spend some time in the garden with a book or my paints. I haven't been able to do anything over the last week because I just can't concentrate.

The worst thing is that I know I'm my own worst enemy. I over think things and drive my family crazy. I'm fairly good with the everyday stuff such as choosing a restaurant or a film or a play to go and see. It's all the other stuff. Moving house, changing jobs/banks/cars, holidays. Look how long it took me to decide to go for a motability car. I'd been eligible for years but I couldn't see the point. The car I had was fine right up until it wasn't and I got scared of driving home in the dark in case it broke down and left me stranded. Then once I'd made my mind up to get one I had the make/model/colour thing to contend with.

It's not that I'm indecisive, far from it, in the past I was often accused of not thinking and being too impulsive. The problem is that being married and having kids means that your decisions now affect other people and so they have to be more considered. After decades of considering other people I'm totally out of practice of making decisions just for me. Also being ill changes things a lot. Now I will make a decision and think 'oh wait a minute, what if this happens or that happens' and before you know it I've talked myself out of it. My problem is that I've become far to aware of the consequences of getting it wrong.

Yesterday I made up a week's worth of drug. I changed my dressing, cleaned the entry site and changed the connector, line and pump. Everything went without a hitch and there was no sign of blood or infection at the entry site and I checked the connector over three times before using it. There have been no problems since so I'm hopeful that will be the end of it. The hospital had said that if there were going to be any problems they would arise when I changed the line and connectors, as that's when the inward pressure on the line would be temporarily interrupted. There was no problem during the change or after and it is almost twenty fours hours on so I should be able to relax now, shouldn't I?

Oh well, I think I've rambled on enough for one day. Tomorrow is another day, and hopefully it will be a better one.

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Welcome to my blog.

This blog is essentially so that my widely scattered family and friends can keep up with all that is happening since I was diagnosed with Pulmonary Hypertension in 2007. If reading because you also have PH or know someone who does, I hope this blog will show that it is possible to enjoy life with a serious illness. I also hope it will offer some support and information along the way. Since starting this blog I have now been accepted on the list for transplant.

Take care

Hazel

About Me

I have been married for 28 years and have two strapping sons. I am small but universally described as scary, determined and tenacious. Diagnosed with Pulmonary Hypertension in 2007 I am generally an optimist and believe everything happens for a reason.